6 weeks ago I was diagnosed with PMR. I have been grieving for my partner who died from Prostate cancer 17 months ago and my world had become a grey, unappetising, unmotivated place. I was afraid of disappearing down the 'slippery slope' of depression that I have had a tendency to for many years, and for me it was important to keep normality uppermost, as it was all too scary to focus on how awful I felt. In spite of it all being a 'keeping up appearances' act, I have kept going with the daily things in my diary, but did have to stay with one of my daughters for 3 days in June this year - '17 when I just had to admit meeting a brick wall that had taken any resources left out.
I had had problems with muscular aches and pains and put them down to my generally low state. I got more and more pain and stiffness, waking early mornings with pain everywhere ending up with several hours of shuffling about and unable to get into my clothes. The stiffness wore off as the day went on, but came back toward the end of the day. Because I was getting support from my GP I didn't want to produce endless 'shopping lists' of other problems, which I realise now was silly. She kept increasing my anti depressant dose.
2 months ago I told her I was on my knees with the pain and stiffness and she immediately thought she knew I had PMR. Blood tests confirmed it and that my inflammation level was at 75 instead of below 5 and started 15 mg Prednisolone daily and the other accompanying Calcium and Alendronic Acid to prevent Osteoporosis . As you will know Prednisolone is a mighty 'mover' , and has suppressed the stiffness and pain and today I started 13 mg daily. My inflammation level went from the 75 to 24 and now less than 5. My GP says my Prednisolone dose will be changed according to the blood tests but will last 18 -24 months.
I was amazed in this stretched NHS crisis time to be offered, and had , 15 sessions of one to one CBT, though I had to go to different surgeries to fit in with the therapist's schedule. I paid for counselling myself as I have used it many times before to support the journey through depression. Friends thought I was silly to spend the money but it has been worth it. I have now finished both the CBT and the counselling (had that for 2+ years to help me as my partner was dying. I had been a nurse and knew where we were heading.) I thought the anti-depressants were working against me and went on a withdrawal programme. I just cannot believe the complete turn around . Colour, some energy and motivation are back!! My GP says I have had PMR for quite some time and wishes I had told her of the stiffness. My mother had PMR.
So sorry this is so long but now I've done this introduction I will be much briefer from here on in! Thank you for your patience if you are still awake and have stayed with me!
Written by
newgirl73
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Welcome new girl 73! I am sorry to hear of the loss of your beloved partner. Many of us within the community have lost someone close to us pre diagnosis and, for this reason, I am convinced stress is a major trigger for this disease.
The magic of pred and it's apparent impact on symptoms is wonderful isn't it? The diagnosis a strange comfort, knowing that the symptoms are real and not imagined, both a blessing and a curse. The good news is that PMR is not terminal, a relief.
The journey however, duration unknown, is very individual and can sometimes fraught. Diagnosed in June I have found this on line community invaluable in coming to terms with, gaining knowledge /understanding, taking ownership and managing my journey through this illness.
Someone, who can empathise from experience, will always answer your post whether to just reinforce you are not alone, or to respond with sound advice. It doesn't matter what the question, so never be afraid to ask.
Newgirl171, so very sorry for your loss, and will keep you in my thoughts and prayers. Don't worry about the length of your post as you would be surprised to know how many are helped by it..... me, for one. Stay strong, Edward
Sorry to hear about your loss and the mental pain you have been through x
It does sound as if it’s now a new start of your journey and I feel proud of you xx keep strong but please never feel alone x. The guys on here are an amazing crowd xx
You sound like a remarkable, strong person. So sorry you have had such a hard time, but glad that you are now feeling better.
I hope you have had a DXA scan to check that you actually need the alendronic acid? Many people are prescribed it, but not many of them actually need it, so it would be good to find out. And you do know not to take your calcium at the same time as prednisone? I didn't for the first few months, and it turns out lots of people only find out by accident that they should be taken several hours apart!
Thanks for that. I usually try not to read the 2 metre tales of caution in the packet but made myself with the Calcium, so found out about the 4 hour time gap needed between thyroxine and taking it. Have to have reminder 'post it' as it is easy to forget at about 11am.! I always thought my mum a little bit crazy having a blue saucepan lid by the front door to remind her about something before she went out. I'm beginning to get it!! L.
Oh newgirl73, my heart goes out to you. I recognise all of the twists and turns of your story. Especially the confusion between the symptoms of PMR and depression. I used to say to my therapist " but it feels so physical".
I am sad for the loss of your partner. It must be very hard to bear, coupled with the exhaustion of being strong for him during his lifetime.
I cared for my mum for 7 years, she had dementia, so it was a very different kind of bereavement when she died, not knowing me and having no real quality of life, so there was relief as well.
A number of us have had these kind of extremely stressful experiences in the run up to PMR, so much so, that it is almost specific. I wish more of our doctors would take this on board, it would lead to a swifter diagnosis, I am sure. Many of us lost someone in the years just before the diagnosis too. That " I just can't go on" feeling becomes manifest in symptoms that actually stop you from going on. You are literally brought to a frozen halt.
I am happy that the colour has come back into your life. It's like the sun coming out from behind a cloud. You have a long journey ahead of you to get well, please stay with us so that we can help support you every step of the way if you want.
Welcome to this forum. I hope you find it as informative and supportive as I have. 🌹
PS. Brevity is not my strong suit either. No one seems to mind.
Newgirl73 my heart went out to you when I read your post. You really have had a tough time. I see that sheffieldjane has used the same expression “my heart goes out to you” and it really felt like that when I read your words. I wish you could have found us earlier as this is a real place of comfort. There is endless kindness, knowledge, empathy and advice on here which makes our journeys a lot easier. I for one would be in a very different place without this forum. You have been so brave on your own but now you are with friends. Big hug from Devon.
So sorry you have had such a bucket load to deal with. My PMR came on 2 months after my mum died and a lot of complicated and unpleasant family stuff to deal with. I have had it for 4 years exactly. Grief work is tiring and draining stuff. Thanks for sharing. Hope you have a good day and run up to Christmas and NY seasons. J.
Thanks for your reply. Solidarity is so helpful to us all isn't it? hope your own day and Christmas plans work well for you. Last Christmas was a blur but actually looking forward to this one. L.
J - 4 years? I'm just starting my 3rd year and have friends who comment on that? People ask - "do you still have that?" or - "I thought that was only supposed to last 2-3 years?" I feel like people must think I'm a hypochondriac. They mean well but don't realize how that makes me feel. PMR is a very underrated and misunderstood disease!!!! 😟
Welcome to this site. So pleased that you find yourself now, after a lot of heartache, in a better place. I'm sure that you will find this site a source of strength, information, and support. No one worries about length of post or what can seem to us,as individuals, petty problems- no problem is petty if it causes anxiety, concern or frustration so ask away! Best wishes for this next phase of your journey- keep in touch. Jackie
Welcome to this site. The others have said it all, how sorry we are to hear about the loss of your partner, your struggle with depression and now PMR! However, so glad to hear you feel you may have turned a corner with the diagnosis.
I just wanted to reinforce HeronNS's message to check that you really do need Alendronic Acid. Ask for a DEXA scan to check your bone density before you agree to take such a potent drug! You could search this site to read many opinions about AA! I hope your calcium also has added vitamin D, but you should also ask for a blood test to check your vitamin D level, as many of us are lacking and it needs topping up, if so.
As the others have said, ask any questions that occur to you, as they might help others as well as you.
Finally, PMR goes into remission in its own time, not your GP's predicted "18 - 24 months".
Thanks for the advice. My GP is organising a bone density scan which will help decide about the AA. I started taking Vit D this time last year myself thinking I was run down and wanted some protection for winter. The Calcium has Vit D3 with it. Obviously no longer taking the previous Vit D of last year.. On the Pred have you felt as if you are running on a high octane fuel - I feel as if, what we used call the choke on our car, is pulled out. Gives energy I didn't have but makes one very tired!!! Thanks for telling me your present situation. L.
I'm not sure if anyone has given you this link to some information for new patients that DorsetLady (one of our 'Aunties' on this forum) has put together? I think she is on holiday at the moment, otherwise she would have sent it to you.
I think you'll find it answers your question about what others call the Duracell Bunny effect of pred, but I really like your choke analagy! The answer is rest and pacing +++++! (The 'choke' effects get less as the dose gets lower, by the way.)
I took an OTC vitamin D preparation for 9 months after diagnosis as my GP didn't prescribe any and my blood level was still very low! So best to get your GP to do the test all the same - belt and braces can't do any harm!
Someone suggested we put a note about ourselves on our posts, but we don't always remember - pred heads!
Welcome Newgirl73....you have come through a few difficult years! A lot of us have tried to stiff upper lip route, but that in itself is exhausting....and we do not have a lot of energy to spare😊 So glad you found this forum of helpful, empathetic, knowledgeable, whiny people! I put whiny in there because everyone gets to whine whenever they want...and we understand!
Being down and depressed is part of the PMR, prednisone, and all the other things in your life. Sharing the frustration really does help...keep us posted🌸
Sorry I didn't reply earlier, and not sure if you will get this now as things move on very quickly don't they.? It is such a source of comfort, support and information. One of the lovely things is being given permission to whine - one doesn't want to tire ones family and friends with honesty but keeping up appearances is very tiring! I am still not sure what is what - the deep tiredness and the Duracell bunny and the uncomfortable eyes all steroid side effects, or all mixed up together with the PMR. thanks for your encouragement.
So glad you are in a better place and the colour is starting to come back into your life. My PMR landed out of the blue just 3 months after my husband's sudden death, and I think there are many others on here with similar stories. Just knowing that "it's not just me" can help in itself.
This is a great community - I don't post that often but read each day and the wisdom and support here has helped me so much. I hope it proves the same for you, and that the colours in your life continue to grow until you are fully back in sunlight
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